Primary Lymphedema

Mickey73

Does Anyone have Primary Lymphedema that would like to add me as a friend for support. I have had Lymphedema in both lower extremities for 20 years. I would love to chat with you.

caropowell

I don't have lymphedema, but my almost 3 year old son was born with primary congenital lymphedema in both feet. It seems to have resolved (knock on wood) in one foot, but he still has it in his left foot and ankle. I'd be glad to chat with you although I can't really provide any contemporary experiences!

Mickey73

Oh, I am so sorry to here that! Mine is mostly in my left leg and ankle too. I wear support knee highs everyday and that helps a lot. I really watch my sodium intake too.Does he do anything to help or prefect the swelling? How old is your son? PS. Trampoline is great therapy.

Mickey73

Your son is 3 . What a cutie!

caropowell

Yes, my son will be 3 in June, so I don't think he's quite ready for the trampoline :-) but that's great to know because I've actually been thinking about signing him up for a tumbling class. So far, I haven't done much in the way of treatment because his specialist advised holding off for the first couple of years. Honestly, I've been hoping that since the right foot got better, the left one would follow. I'm planning on becoming more proactive, though, and am going to get back in touch with the lymphedema physical therapist I talked to in his first year. It sounds like yours didn't start until you were a teenager? Was there something that triggered it or did it just come out of nowhere?

Mickey73

Yes mine was triggered when I went through puberty. I have had It for many years. My left leg really is the only one that swells, but if I do a whole lot of activtiy I can tell a little swelling in my right too. I am pretty strict with what I eat and I wear my support stockings every day. I wish you the best with your son and I am here for any support or questions you may have . Blessings to you and your son.